ovarian cancer part II

It's been almost two weeks since the news came out that Angelina had a double mastectomy after finding she had  the BRAC 1 gene.  I have been thinking about this off and on over the last few weeks and I am angry!   Still!
  It breaks my heart that because she is so wealthy and famous her challenges are news.   Yes she is drawing attention to a problem in America and around the world...but she is also not making it any easier for the rest of us that are left to wonder if we have the gene.
Yes I know I am being petty...but my life is as important as hers. To my husband, to my kids, to my family and friend I am important!  It doesn't matter how much money you have or you know when you are sick or dying...but those things get the coverage in reality...so the rest of us sit and wait for the cost of genetic testing to come down.
grrrrr....I feel just as angry writing this as I do thinking it...it makes me feel sad that I feel this way...but I do.  

Ovarian Cancer...still chasing me

Why is that every time I start to feel comfortable with my decision not to spend $3400.00 on genetic testing something comes along and makes me reconsider?   All over the news is the headlines that Angelina Jolie had a double mastectomy after finding that she was a gene carrier for BRAC1.   She also plans to have her ovaries removed.   I applaud her decision...she is bringing attention that really needs attention.   Far too many women die of ovarian cancer because it is so silent in it's approach...you have to be very advanced in the disease before most symptoms are present or felt.   I am distressed that so many women like myself know we are at risk and can't afford to do anything about it.   Ms Jolie has the money for genetic testing and then the "elective surgeries."
I know as the daughter of a deceased mother who lost her battle to ovarian cancer that I walk a fine line everyday in knowing what my risks are.   I am not as informed about my body as I would like to be...but I am way more informed that most...I have blood tests done every year that determine if I have developed any cysts or growths in my female organs.   I also have a pelvic ultrasound annually to determine if I have anything that the test didn't see.  Then I get to wait for another year to pass before I do it again.  Sometimes I pay for these tests out of pocket...because insurance doesn't see them as necessary.     I do however, for piece of mind and as Ms. Jolie put it...For my Family.
I don't want to be unprepared.  This disease may never get it's clutches on me...but not knowing if I have this horrible gene mutation isn't just about me...it's about my families chances.   My children are as likely to develop this mutation as I am...they not only lost a grandmother long before they were born they lost an Aunt to breast cancer just days after my son was born.   Putting them at a much higher risk of developing this disease.  Also at risk are my cousins...both male and female...because you don't have to have ovaries to develop breast cancer...just breasts.   My brother is at risk as well as his child.   It leaves much to chance by not having the genetic test.
My last insurance company informed me that I would have to be diagnosed with some form of cancer before it would pay for my genetic testing...doesn't that seem a little strange.  I have to get cancer before they will allow me to find out if I am at risk of developing cancer.
For me this isn't just about what I can't have...it's about what risks I am taking and I know that the insurance company won't turn a profit if they give into everyone's demands but I don't believe that insurance companies should be for profit.  It's about doing the right thing...and in this case I feel like they are definitely not doing the right thing.
I know I sound like I am just ranting...but this just doesn't make sense to me...

In case you haven't read about Angelina's story here is a link http://www.nydailynews.com/entertainment/gossip/pitt-jolie-absolutely-heroic-article-1.1343623

Giftedness?

       So I got a phone call from the school today...Catie has been accepted to the gifted program.  I never doubted for a moment that she would get in...but now I am concerned that the program isn't going to be strong enough for her.   She tested very high on the exams and they are skipping over some of the steps to admit her.  She needs something to keep her busy and distract her from the boredom at school.
       I have been doing some research into what's going to happen...she is going to have an IEP.  In Kansas she is considered a special needs child...I could have told them that.   She totally has special needs...but to be labeled special needs is kind of different.  I hope that Nathan and I do the best by her.   She is very special to us...and she is smart enough to know that some of the things she's learning in school are below where she is...she compares the school to preschool at least once a week.
       I try to explain to her that she isn't the only child in the class and the teacher has to teach at the level of all of the students...not each individual student.  The teacher can't be expected to write a lesson plan up for her...all by herself, or maybe she can?  I do hope that Catie will be patient though this process.
If all else fails she can be a home schooled child...I don't know how much I want to be involved in this...she and I bump heads pretty hard sometimes.  There are some online services here in Kansas that will take care of some of this, but she still will be at home all day with me.   Socially she is also very far behind the other kids in the class she is in...she started school a year early putting her on the young end of the class and making it hard for her to introduce herself...she is also somewhat socially inept.  She tries, but doesn't know how to approach other people her age...she can relate to people much older or younger...just not her age.
        So here we be with lots to think about.   She is so freaking smart it scares me...but I know she will be fine.  I have tons of faith in her.  We just have to stick together.   I also want to help her understand that it's not her job to teach everyone.   The kids think she is a know it all and stuck up.  Another block for her socially...she's going to be ok though.
One thing I read recently was that giftedness is not a good thing, a nice thing or related to how well your child is doing.  Giftedness is not any "thing" in particular.  The term identifies a need.   The term applies to a child that learns differently enough from the other students in the class to require measures and methods beyond those used in the "normal" grade level taken in the classroom.


It's so important for me to remember this...she is special, but not in that she is any better, just different.

Day 4

I am four days into not being on the Topamax.  I stopped taking with my doctor's help...I want try a more Eastern approach to my migraines.  I have added to my vitamin regiment B2, Magnesium, and Co-Q10.  I have had two migraines since I started decreasing the medication...I expected that.  I am also making provisions that should they become less bearable I am going to try and rely on acupuncture.
I am really excited that it hasn't been more.   I am having clearer thoughts and the numbness in my fingers and toes is going away.  I feel like things are moving the right direction.
If there is a chance that I can become less dependent on these medications I will be very excited!  It's been a long time since I didn't have regular migraines.   They improved so much in the last two years I can't hope and pray that I am not making a huge mistake.
I will have to wait and see how this goes...for now I am doing ok.

private?

I will start by stating that several of the following posts were never published when I lived in Bloomington...I was going though something very tough and didn't feel like I could share it with anyone...they are out of order and out of context now.  But I am just publishing everything to get it all out there...just because...it's all over...what's done is done.

Ok so I don't know how many people are reading my blog anymore...I don't care.  It never was about how many people were reading for me.  It was about getting the word out.  I know there are people out there going thought the same shit as me.  So whatever.  If you read great...if not...oh well.  I really write mostly for me and to get the words out of me.  They get stuck sometime in me.  You see I have been all blocked for the last two months no words all the thoughts have slowed to a trickle.  Until today...then I knew I needed to write again...so here I am.  I think the problem has been the medication I was on.
I am changing that.  I have migraines you see...that has been the topic of a lot of my blog posts.   A lot of rants and many cries.   I fought with two different insurance companies now to get the right medication. After much debate I am going off of the daily medication with doctor supervision and using vitamin therapy and if I need to acupuncture and possibly chiropractic care.   I want to use a more holistic  approach to my migraines....I might be crazy but I need a change.  I am finally clear headed today after over a year of having my brain feel like there was a fog in it.
So here I go with my horrible grammar...Ms Peak would be appalled and my spelling stumping even the  spell check...please bear with me and if you don't I don't mind.  It's just the simple ramblings of my simple mind.
Know this I love my husband, I love children and I love my God and all those things will be deeply laced in my writing.

Grandma Rae passed away

This is really out of order...I never published it...because I was mad at myself for writing it...not I am publishing all of my writing...and not going back.
Last Friday I found out that Grandma Rae passed away.  She had been ill it seemed my whole life...I don't know anytime that she wasn't sick from something.   She has always been in and out of the hospital and was on disability since I was in grade school.  When mom got sick grandma was right there by her side.   Ready to take care of her...my mom was always loyal to her and she never asked for a thing.  When my mom was sick my grandmother was very not nice to my dad.   She was ok to my mom but she was really awful to my dad after my mom died and it made it really hard for me to forgiver her.  All these years later I am sad that I did have the ability to look past her  pain and be nice and go see her in her last few years even though I knew it was getting close.   I was still so mad.   I was still so heart broken over the way she treated my dad all those years ago.  My dad loved her and my mom's whole family so much and it felt like he was betrayed.   All those years wasted!   All that time and and energy wasted...so sad...so many memories we are never going to get back....

weird and making me mad...

So Nathan keeps talking to everyone as if things are going as planned...the kids and his parents...it's driving me crazy.  I don't know how much longer I can keep up the act.  I feel like I am leading the kids on and lying to them.  It's breaking my heart and I don't want to break their hearts.   Maybe I am being selfish though and maybe I want him to tell the kids so they can be miserable with me.
I am in deep grief and have to keep playing "all right" for their sake.
I am not sure that Nathan truly understands what he has asked me to do.   This last week has been pure hell for me and at times I have been wondering when we left the same page. 
WE sure aren't on it right now.   We need to get back on it...for the sake of our marriage first and foremost and for our family. 
Have been working toward some common goals and I feel like we are doing a good job, but all of a sudden the train is off the track and I don't know why. 
I still deeply love this man....and think about him many times a day.   He isn't just the father of my kids...he is the love of my life.   I can't imagine not having him beside me...he is so a part of my life.   I love the things that he does for me and to me and with me and around me.   I just don't know what this roller coaster we are currently on is going to take us.   We need to get this all figured out and soon...before I break...or have a break down.
Hiding it from the kids is really hurting me the most.   It feels like we are keeping a horrible secret....I don't want to drop this on them after so many months of having planned and moved things around and readied their little lives only to have everything stay the same, but be horribly  be broken.
So much is wrong right now.

never going to have another child

As my husband sits beside me on the couch I am coming to the realization that I probably will not have another child.  I think that even if Nathan decides to go ahead and have another child he will forever look back on this moment and wonder.  I also think that he is going to look back at this moment if something happens and blame me.   It will all be my fault.  Our life is never going to be the same.  I am never going to have another child because he has introduced this doubt into our marriage.   I can never look back at this point in our marriage and be happy again.   I am not sure how I am going to be happy in our marriage again...because he set me up to fail here....I don't know what to do....
I feel like I am in the bottom of pit and I am so deep in the pit that I can't even see the top.


Nathan and need to work this out or our marriage is in serious trouble...I am afraid.   I am very afraid!

We are still talking and working

It's hard work being married...at one point in my marriage I made the mistake of assuming it was easy and letting this relationship coast...it cost our relationship very valuable trust.   I learned that lesson and now we work very hard on our marriage.
Right now we are in crisis control...we know that there has been a breech and both of us have to manage it to get the damage under control in order to get the pieces of our lives back in places.  My husband is way better at this than I am.  He knows to pull me close.  I am pull away and handle the situation from afar while we really need to be in close proximity to each other and remember that   we love each other very much!
We made some great strides last night I think it gave us some breathing room and we will be able to relax a little.  I defiantly don't feel like my house of cards is falling down around me today so much as I have the last few days. 
Nathan I think figured out where the source of his anxiety has come from and is pretty sure that the extend wait was just to much for him.  (so strange  he is always so patient)  It's been ten weeks today since we finished our homestudy.   We were told it would take three to four weeks for the state to get us licensed and we are still waiting.
The only thing I can think is that moms have to be so patient that we just keep on waiting and waiting...with no regard to time and this might have just been too much for him....so he felt like he needed to back out.   Only that was too much for me...that was almost the straw that broke me!
I try and carry all of the family issues with all of Catie's allergies and his medical problems and my own and now he takes away the one thing the whole family is looking forward too...it was almost too much.
I almost had a nervous breakdown.    I am surprised that I didn't have a few anxiety attacks just for the hell of it.   This has been the worst ten days I have had in the last four years.
Today feels so much better...I really feel like I need to get out of the house and get some air...it feels like I have been breathing the same uncomfortable air for too many days in a row...I may go for a long walk to clear my head today, or a bike ride.
 

still out there and waiting

Follow up to the earlier blog post...I posted earlier that we are going to get though this...and I truly believe that.  I also feel in my soul that I have another child out there somewhere waiting for me and that child need me...just like the ones I already have in my care...don't worry baby mommy hasn't forgotten.  I don't think Dad has either...he just blinked.  Life will go on at some point and this will all be over.   Child or no child there is a passion in me to help those in need and I will fill it.

Why?

Last Friday I had a meeting with my agent from the agency...it was direct and to the point. One of my references sent in a copy of one of my blog posts that I wrote that basically made me look like a neglectful parent.   While I admit the period while I was having sever migraines I had a few that were bad enough I was concerned that I bordering on neglect.  I never felt like my kids were suffering...I was suffering...but they were not.  If there was ever a time that I felt I was unable to care for the children I did not hesitate to call Nathan and have him come home from work.  WE now have to have a plan in place for my migraines...I have to have it on paper...what I will do in the even I develop a sever migraine.
I also had to call my doctor and get a letter from him telling the state that I am fit to have my children and that I will be fit to have someone else's child...that was one of the weirdest phone calls I have had to make in a while.  I made it though...I feel like I am trying to swim up stream though...is this all for nothing....
Nathan doesn't know if he really wants another child and State keep going forward and then backward...I am unsure as to what to do...
I am even starting to question if this is even worth all the fight I am having to do...surly God has a reason for all these hold ups.   Does it maybe mean that we aren't suppose to be going down this road...or am I just hearing the devil's word and giving in to easy road because I don't want discord in my household?   I am so lost  and I need help and God is so silent right now...I need his help and guidance and I am just not getting it....

staring contest...

I feel like Nathan and I have entered into this long drawn out staring contest and everyone was excited to watch for a few minutes and really pulling for one side or the other for a while.   Now they are all just a little bored...are we too? Did he blink?  Is that where the uncertainty is coming from?   We have gone over the same conversation a hundred times...a hundred ways...we are questioning everything...ourselves...the system...the people we feel supporting us.   All of these things seem so strange because just a few months ago everything seemed so right...the waiting is so hard.
Patience!
God is teaching us one of the hardest lessons of our lives and we have to wait though it...there is nothing we can do but go though...there is no over or around...just though. We are learning a lot about ourselves and each other...though it all we are standing strong...
I am proud of us...I have been really worried at points that we could not make it though this...but I think that this is not a hurdle that we won't have any trouble clearing...
"God is just learning us a lesson"
Really there was only one day that I didn't want to get our of bed and deal with the world...Nathan is darn lucky his parents were in town that day and I knew that I didn't want to reveal this to them or this might have spiraled into something really bad...I got out of bed and put on a happy face and dealt with the day.   It was a really hard day...it was a shitty day in fact.   After that day I knew that I was going to live and we were going to work this out because we have survived worse and made it though to the other side.
We still don't have all the answers...I made a call to our pride trainer after talking to a wonderful friend who has been though the foster care process a few times.  She recommended being more proactive and calling our trainer and seeing where everyone else in the class was...see if everyone else had their license.  So I called her...she said to give our agent a call more often...not be so patient...the agency is under budget and under staffed and likely she isn't calling because we are low priority.   We need to reminder that we really want this...and find out why we haven't gotten our license yet.    So Nathan called...no answer...I called...no answer...I will try again...
I will get an answer....maybe I should let Nathan try...he remembers things better than I do and he will have a better change of making sense of the conversation that I will.
I hate waiting!!!!

still on hold and walking on egg shells

We still don't have a license and I don't have a answer from Nathan.   I feel like I am in hell my life is on hold and I am expected to just wait...for everything...for the state...for his answer...I am really tired~
On the flip side my body is finally starting to cooperate and my headaches are getting better....I am at a really high dose of medication though...it makes me not want to eat and I have lost some weight.  I wouldn't mind if I lost some more.
I have been trying very hard to give Nathan as much space as I possible can and not push him in any way...I don't want to pressure him or influence his decision in any way.  
Am I being foolish, am I letting him decide our whole life path?   We decided to have both of the other two kids together...I just don't want to be the one that forces him to regret our decision in a few years....
I also don't want to regret that I didn't get a say in a few years....if we don't end up having another child I am going to feel like my decision was taken away from me?  How are we going to do this?  How do we do this together and apart and with God?
What is missing from this process that Nathan isn't feeling...He said in his heart he feels like he really would love to adopt a baby...REALLY????
A BABY???
Now you want a baby?
aren't we back pedaling a little?
I am so confused and so lost and so don't know what to do any more

I need answers...I have questions???

What's in these egg?

Red dye? It's driving me crazy right now...my daughter has this known allergy.   She becomes very ill when she consumes red dye.   I have lots of questions about how come more information isn't out there.  I know there is a lot more information out there...  It's all kind of conflicting.
I continue to monitor Catie's intake and keep a close watch on her.  Every once and a while we slip up.   I really look at labels as often as I can to make I can keep her safe.  I also try and limit the amount of red that I let Alex have...I do let him have a few things.  Alex doesn't seem to have any sensitivities to red dye in the allergic sense.  He seems to have these hyperactivity issues these days.     I am taking a long hard look at these dyes and seeing what is causing the over activity in him.  
These dyes have been outlawed in Europe...so maybe we need to take a long hard look at why we need them so bad here...

I'm trying to cook a lot more at home a lot more scratch...it sure does taste better.  I have to say though...The boxed foods that are convenient  are addictive.  We picked up some frozen pot pies and they are bad for you(360 Calories in a small one)...I just wanted quick and easy...but the kids loved them...too bad they don't love my pot pie.  My pot pie just doesn't have all the sugar, fat and salt in it.   

We made it...

From the start I knew this day was going to be hard...this is these are some of the pictures from our journey...starting with our last day at Normal First United Methodist. Both of the kids preformed that day.  Catie played chimes...and Alex sang.   We went to both services and visited with as many people as we could before we had to go.  We went to close up the house...and off we went on our adventure.

We stopped to take a picture of the sunset in middle of Missouri during a wind storm at Alex's request.   

We had dinner at Hannibal Mo 

We stopped in Kansas City and were tourist for a day...we went to see Grand St Cafe.
Where Nathan's career started all those years ago.

Oh no the Badminton game wins again!!!!

Oh it looks like a hippo...no a elephant...no a water buffalo!
Nope it's a Henry Moore sculpture 

Catie and Alex in the Hallmart visitor center.

Waiting in line for Kaleidoscope 

All played out...and ready for dinner.

Just pretending...

So sleepy

Organic factory and gift shop...on the way to our new home...not a cheap stop...but yummy!

The cars were clean until we were until we pulled off on this dirt and gravel road to try the organic store.

Our first visit to the park.

Alex's first day to school...he sure was ready

Catie was ready to start school too...

My small group gave me a send off party on Friday that was so thoughtful and heartfelt it nearly killed me.   It was one of the hardest days of my life.  These are some of the most powerful women I know.  I love and respect these women beyond words.  When I need advice these are the women I go to...for anything...from parenting to spiritual advice.   These women have helped me though everything since we moved here.  They have been my family away from Kansas City.   My mentors, role models, partners in crime from time to time, confidantes, co-leader, mission examples, lunch dates, play dates for the kids, and I have even traveled with a few.   I can say that there isn't one that I don't love and I wouldn't give my life for.   I have enjoyed working hard for this group...it has been so rewarding.   I am going to miss the fun times and the great adventures we have had.  They gave me a necklace that says Blessed....yes I am because I met all of you.   Life would have been so different had we joined a different church and started somewhere else....but I know God had a plan and I was where I needed to be.  

They saw me though a growing time of my life and I am so grateful...I pray the are open to new women as they were to me...it was such a Blessing to my life and helped me so much when I was so searching.   

Thank you ladies.  I will miss you...

 

I am about to have a real full blow panic attack...I just signed the letter and sealed the envelope returning this important piece of paper!   I can't believe I am doing this!  We worked so hard to get this piece of paper and now we are just going to mail it back to them...we didn't even use it...not even once.   My mind is whirling and racing all at the same time!   I don't even know what to do in this very moment!  This is surly going to kill me...I guess whatever doesn't kill you makes you stronger.
I'm gonna be freaking wonder woman!

Still going to do this IN Kansas

I should start at the beginning...WE ARE MOVING TO KANSAS!

We are finally getting the chance to move back home with family.   This is huge!  We have been here four years now and as much as we love Bloomington/Normal we really Kansas people.   In the coming weeks we will be packing a few things and letting the movers handle the rest.   Nathan negotiated movers....YEAH!   I am so excited about that!   We will be tying up all the loose ends here and finishing up school and packing up clothes, the dog and any remaining little bits.   

One big question that has loomed in everyone's minds and out of a few mouths is what is going to happen with Foster Care??? 

OMGosh  Our license does not transfer in anyway...first of all...we are only licensed in the state of Illinois.  So we have to return that to the great state of Illinois. Boooo!   So we pray and think and wait and see what we are going to do...we have a few friends here that we have consulted with on the issue and one thing that has rung true is that we still feel called to do what we have been doing.  I have said almost in passing that maybe we haven't gotten a call to this point and I mean we haven't gotten ANY calls to this point because God doesn't feel like we are suppose to be a three child family.   One very wise friend told me last night that just because our child isn't here in Illinois doesn't mean that they aren't in Kansas.   

I pondered that all the way home...and when we got home God had answered my thoughts and prayers in a very direct way...we got our very first call.  

We could not accept the child and told the caller but it was the answer I needed in that moment.  God is telling us we need to pursue our dream of becoming adoptive parents from the foster care system.   God couldn't have said it more clearly if He (or She) had stepped right in front of me and shook me and said snap out of it!   It is all going to be ok!   I have all the answers and you will be just fine.  

Thank you to my wise friend...and Thank you God!

http://www.theforgotteninitiative.org/

Happy New Years

Resolutions....something I don't do....because if you make a resolution you have to keep it right?   I had to explain resolutions to Alex last night for his homework for school.  Yes he had homework over the holiday week...strange I know...but whatever.  I explained that a resolution was a promise to ones self and a promise is something that we don't break.  I try not to make promises...they have a way of getting broken and I don't like breaking promises.   So to make a resolution just seemed like a crime.   So I am not making a resolution.  

Have I ever made resolutions before...sure!  I have made the silly ones I'm not going to eat any chocolate this year, I'm going to loose 50 pounds, I'm going to spend less money on clothes and my favorite...I'm going to workout more...none of them seem so out of line except...really I'm not going to keep any of them!

I do not eat as much chocolate as I use to...I have lost a lot of weight this last year, we spend lots less on clothes, and you guessed it...I now work out.   I don't know how all that happened...my guess that I didn't feel the pressure of having to live up to a resolution.

As we waited for the year to wind down we had a pretty quite evening last night...Alex played with Legos and Catie created a new masterpiece.  It was so nice to have my little ones at home safe and sound.  Nathan was home by 8:30 and we watched the ball drop on youtube via 2012.  I showed them pictures of celebrations from around the world.  They went to bed and we watched the ball drop in New York and then we went to bed... aren't we old.



The last thing I want to include is that while still are waiting for the phone call I pray for the safety of my third child.  No matter where that child is...I know that God is with them and I pray that God is comforting them.   We have not given up hope or changed our minds or even changed our plans...we just are waiting.  

That boy and His Birthday! Alex is 6???

A root-beer float on his birthday 

Long standing tradition
 donuts on your birthday!

It can't be can it?  I can't have a six year old infant can I?   Where did the time go and what happened to my baby?  He grew up with out my permission I might add...
I try not to wish away the days and let him be little...he is my youngest and until we have a third (like that's ever going to happen) I need to enjoy every minute of every day.  That is very hard to do when he is now six and still having toilet training issues....grrrr but that's another blog page.
He had his birthday party on Sunday and it was so much fun....we had it at home...his idea.  He wanted balloons and streamers......ok...we can do that!
   I got all the decorations at the dollar tree.  Just $35. to really go over top on the house...that included all the cups plates, napkins and party favors.   I baked cupcakes.   Nathan iced...it helps he's a chef...but really anyone could do what we did...Alex wanted sprinkles.   Blue and white since sis has a red dye allergy...red dye is made from crushed red bugs...(ew) so we avoid it most days as a whole.  He's pretty sweet to think of her though.  I got banners and hanging signs and a table top thing...it was birthday city at our house.  The streamers are still up...
The games Catie and I thought up..and Alex approves...Powerade bowling, Straw and pipe-cleaner crown building, and straw balloon racing.  It was so much fun and the kid had a good time too!

Alex was less than a good sport at times...but most kids are his age...we are working on it...he seems to have picked up a few bad habits at school from a little boy that we think just is not a good influence... isn't that always the case(smh) well it just won't work in my house.   1.2.3 to your room man.